Puzzle Piece Month

April is Autism Awareness month or as Haven calls it, puzzle piece month. April 2nd is also World Autism Day. But April means a little more to me than just puzzle pieces, blue lights, and bringing awareness, something I strive to do year round. April is also the first time I heard a doctor tell me they thought my perfect little not even two year old girl had autism. April was the first time I didn’t sleep for nights because I spent every second trying to google what I needed to do to help my sweet baby succeed. I broke in April, physically, mentally, and especially in my heart. I still remember just laying on the couch sobbing for days. April is hard. I sometimes find myself in a funk. It’s the reminder of the day that my life as I knew it changed, the day so many hopes and dreams I had for MY baby changed. When you get pregnant you think about all these things, and you have all these fears and then one day the world crashes around you and that all changes. One day you learn your baby has Autism, and then a brain disorder, and then so many other co-morbidites that come with it. In April, our lives changed forever. They didn’t end, but they drastically changed. I wouldn’t trade Haven or any of her diagnosis’s for the entire world. She has changed me for the best. She has taught me more than I will ever be able to teach her. Our lives may be harder now, but our hearts are so much fuller.

Did you know that I fall asleep with a four and a half year old glued to my body every night? Or that 90 percent of the time she’s thrashing and panicking? Haven’s mind and body do not come to a state of rest on its own, she takes melatonin usually just to fall asleep. Once she’s finally asleep we’re up multiple Times in the night after.

Researchers estimate that between 40% and 80% of children with ASD have difficulty sleeping mostly due to sleep apnea, missed social cues, and their inability to regulate their own melatonin production. •

Did you know that Havens behaviors on average, last an hour each time? Sometimes happening multiple times a day? Most the time consisting of biting, punching, hair pulling, property destruction, and self inflicting behaviors. Usually she only lashes out at me, but if she’s with someone she’s comfortable with she may be violent towards them as well.

• Nearly 28 percent of 8 year olds with ASD have injurious behaviors. Most commonly skin biting, scratching, and head banging. •

Did you know that Haven started the process of being diagnosed at 2 years old (anyone telling you that is to young, is to ignorant to see that early intervention is the Absolute BEST chance of these kiddos living a normal life.)

• Most children were still being diagnosed after age 4, though autism can be reliably diagnosed as early as age 2. •

“If you’ve met one person with autism, you’ve met ONE person with autism.” Autism is a very wide spectrum. No two kids are alike even though they have the same diagnosis. Girls with Autism are more rare and in my experience manifest differently. I had a therapist tell me girls are more intense and aggressive and that has definitely proven to be true in our lives.

• Boys are 4 times more like to be diagnosed with Autism than girls. 1 in every 40 boys will have an Autism diagnosis. This number has been steadily rising and I don’t see that changing. Many have views on what causes Autism and I’m not here to debate that but I do know something is happening and Autism is not going anywhere. •

Did you know they told me that my baby would never talk? That Mia and I began to learn sign language because We were told that would be her only means of communication. That she went under for an ABR (automated brain stem response) hearing test because they thought she was deaf before they knew she had Autism.

• One third of those with Autism are non verbal. •

Did you know that Haven has done therapy 5 days a week since she was 18 months old and ABA therapy every day as well as in home daily for the last year and a half? ABA is controversial in the autism community but it has worked for us and is a big help in our lives. Havens therapists love her and really work hard to teach her skills to help her throughout life.

• The most effective ASD treatments today are ABA (applied behavioral analysis), occupational, speech, and physical therapy. •

Did you know that Haven has ZERO sense of danger and shows no caution to things you and I would be weary of? Two things therapists have said to me that stuck with me and put the fear of God in me. Never leave her with people you aren’t absolutely 100 percent sure about, she is a prime candidate for being a shaken baby, and to watch her around water.

• Drowning is the number one cause of death in those with autism and accounts for 90 percent of deaths associated with wandering or bolting in those on the spectrum. •

Did you know raising a child with Autism costs an average $60,000 more a year than a neurotypical? Autism is expensive. Being Havens caregiver is expensive. Not being able to work a normal job because of her needs is expensive. Last year alone I spent over a month with her in the hospital, unpaid. We receive no benefits, no disability or government assistance besides Havens disability Medicaid (health insurance)

• Mothers of Children with ASD earn 56 percent less than mothers of children with no health limitations and 35 percent less than mothers of children with other disabilities or disorders. •

Haven’s a lot most days. There isn’t a lot of middle ground with her. She’s either extremely happy and going a thousand miles per hour or she’s down, really down and stuck in her world of OCD and constant fixations. She loves pineapple pizza, queso, and McDonald’s breakfasts. Haven toe walks and panics in a loud room full of people, but she also twirls around the house like a ballerina and sings her feelings when she’s happy. She is the most inquisitive tiny human I have ever met, asks HUNDREDS of questions a day, she is constantly trying to figure the world out. She adores her sister even though Mia deals with a lot having the big sister role. She has slowly started to warm up to those around her that she used to not let near her. And even on her bad days she’s trying really, really hard to adjust and be part of this big scary world around her.

Somedays Autism is so dark and scary. Some days I find myself resenting the world around me and the seemingly minuscule complaints of those with “normal” children. Somedays I struggle with how I am going to do this forever. But every day I praise God for entrusting Haven in my care. Every day I am thankful we live in a country and time with the resources we have that have helped and continue to help Haven reach her absolute highest potential. I am thankful for the doctors, therapists, and support system we have. For those that fight and advocate with us, and those that carry us on the hard days. It’s April. It’s our month to be able to scream our information and hopes and dreams and woes without everyone getting as annoyed as usual, but I encourage you to do that monthly, weekly, daily. Awareness, acceptance, and spreading knowledge is our best chance at helping these kiddos to live their best lives.

Be the good.

xoxo Taylor

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